Tuesday, June 7, 2011

Addie's NICU Stay Part 2

Tuesday, May 24 - We visited Addie several times this day. Adam got to hold her in the morning for about 45 mins and gave her a bottle.

They had already bumped her feeds up from 10 mls to 25 mls and then again to 45 mls. She, thankfully, had very few issues with the feeds. We had been told the day after her surgery, before they began feeding her, that she had a delayed swallow reflex. Something that could have been from neurologically damage or from the intubation process or just from being slightly preemie. The risk with a delayed swallow reflex is aspiration and can lead to problems long term that could eventually require a permanent feeding tube. So seeing Addie doing so well with her feeds and them bumping her volume up so quickly was an awesome thing to witness. We did have to feed her side lying for a while and she was on a slow flow nipple but that was all the help she needed.

I got discharged by my ob that evening, but we were able to room in - basically stay at the hospital off the radar. You're there but you're not there. You don't get nurse visits or a room bill. You just sleep in the room they assign you and are on your own. I was very thankful that we were able to do this and planned on staying as long as they would allow. We did have to change rooms from our upgraded suite to a normal hospital room but that was fine. My doctor didn't get to the hospital til 7pm that night, as she was coming from North Austin. Adam had gone home to take a nap so it was just my ob and I. She stayed for an hour visiting! So blessed to have her as my doctor!! We discussed how quickly I could drive as that was a major factor in me going home or not - whether I could get back to the NICU by myself.

After Adam returned from his nap, we went back to the NICU and gave her the 9pm feed and then it was my turn to hold her for an hour. At that time we were only allowed to hold her twice a day, so we each got a turn. We still had to keep her as flat as we could. They had tried to sit her up on Sunday and it had induced tremors so her little system couldn't handle the pressure still. We didn't push them to try sitting her up again. We were content for things to take as long as need be.

Wednesday, May 25 -We definitely had our routine down by this time. Sleep til 9am. Get up to take pain meds, eat breakfast, pump and then make it to the NICU by her 12pm feed. Back to the room for a late lunch, more meds, more pumping then back for 3pm feed just me while Adam returned home for a nap. Then both of us back after shift change for her 9pm and sometimes midnight feedings. Late dinner. There were several places that delivered around the hospital... as late as 3am!

This was the day that I ate peanut butter crackers while pumping and thought I got crumbs in the milk and had to pour out 90 mls. I nearly cried!! Because I had to toss so much out, Addie surpassed me on volume that day. Which was a wonderful 'problem' to have. They started suplementing formula.

This was also the day that I noticed that I didn't do so well by myself. I was ok as long as I was in the NICU or with Adam. But sitting in the room by myself was when the hormones and gravity of the situation would hit me. Was she doing fabulous, as well as we could of possibly hoped and prayed for? ABSOLUTELY. But it's still a stressful, emotional situation to have a baby in the NICU. Everytime the boys would come visit, I felt torn. When I was with them, I wanted to be home. When I was with Addie in the NICU, I wanted to stay by her side 24/7. I had to give it some real thought and figure out what *I* needed. I knew my kids needed me, all 3 of them. And unfortunately the three of them were not in the same location.

A huge deciding factor was that Adam had to return to work that Friday. And I would be at the hospital - alone - a lot more. I knew I could spend more time in the NICU than I had been, sitting by her bed all day. But at that point... she was still sleeping a lot and there wasn't much I could do for her. And I quickly figured out that her schedule was pretty set. Feeds every 3 hours. I could easily time visits from home to be there for 2 or 3 feeds a day. We were fortunate enough to only live 10 miles from the hospital. So I was seriously leaning toward going home. When your 3 old son asks you to come home, it's very hard to say no. And Jackson was asking everytime he would come visit.

Thursday, May 26 - We visited in the morning, ate lunch in the room and discussed me going home that night with Adam, took a nap, and went back up for the 9pm feeding. Dr. Dekowski happened to be there that evening and we talked to him about her progress. It was at this point that he said it would be a matter of days, not weeks before she was released. Which was FABULOUS news. They needed to get her feeds up, which was going extremely well and seemed like it would just be a matter of time. Then they needed to see her gain weight (she was still losing because of all the fluid draining from her head). We were told this evening that we could pick her up as much and as often as we liked and that she had been cleared from the neuro docs to be tilted and held upright as she could tolerate. We were ecstatic! Because she could be handled a little less delicately, I was able to nurse her for the first time that night. Which worked out wonderfully.

I was high on love hormones for our trip home. Adam was returning to work the next morning and I knew that me staying overnight alone was not in my best interest. It was hard putting my interest ahead of Addie's but I knew she was in good hands, and I knew that ultimately doing what was best for me would be to her benefit as well, in this situation. She had already surpassed my milk production. I had been walking the bottles down to her after each pumping session but thanks to my cracker crumb concerns, I was way behind. I could just as easily transport her milk in a cooler to her once or twice a day as I could walk it to her four times a day. It wasn't easy, but we left to go home that night.

We hadn't told the boys we were coming home, so we surprised them with our arrival. Was a great feeling to be home after being in the hospital a week, albeit bitter sweet.

How a VP shunt works

Welcome to Anything Can Be

This blog came to be after we found out our unborn daughter had fetal hydrocephalus at a 28 wk growth scan. It is my intention to share her journey with not just our friends and family, but with anyone that is experiencing the roller coaster ride that is hydrocephalus, be it congenital or acquired, newly diagnosed or long time hydro warrior. Please note that I am not a medical professional and any and all words are just the thoughts, opinions and experiences of a hydro mom.And despite what a large part of our world hydrocephalus is, there will be posts about our LIFE in general. We do try our hardest to not let hydrocephalus define our lives. Somedays we succeed more than others.Feel free to leave us some comment love! WE love comments around here! If you are a pregnant newly diagnosed hydro mom, I suggest you start at the oldest post and work your way forward. And feel free to contact me aimeechapman@gmail.com .Blessings ~Aimee

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